advocating for aleigha – my rare disease story

Month: January 2016

January 1st has always been a seemingly peppy and fun-filled day for me, full of laughter and hope as we make the transition into the new year. For as long as I can remember, it was a day spent with the people I held dear and formulating a rough sketch of what the next 365 days could possibly hold. New year, new me, right? But this year was a little different. I mean I probably wouldn’t be writing this if it weren’t. This year, as I sit here and reminisce on a full year of being ill, I am alone and there are tears that fall uncontrollably for the struggles, the pain, and the loss that seemingly consumed 2015.

Here’s the thing:

What they don’t tell you about being diagnosed with a life-altering disease (or in my case, diseases) is that it doesn’t just affect your health. Doctors leave you with a list of possible symptoms and bottles of pills you must religiously swallow two to three times a day, but they don’t prepare you for the sheer amount of loss and grief that is chronic illness. As suddenly as my symptoms came on, my career as a college student had ended and with that the majority of the friends and people my life had seemed so firmly based on. I can’t even blame them, really. Illness is a relentless and selfish bastard that greedily eats away at you, trying its best to steal everything that makes you, well, you.

I never knew what true physical pain was until this past year. I had no clue that sheer pain could cause you to lose consciousness, that it would rob me of ever having another good night’s sleep, that it would steal my mobility and leave me unable to participate in my favorite activities. I never knew what it felt like to be so fatigued and tired all the time that just getting out of bed would seem like some great achievement. I didn’t know that stairs would morph into mountains and showers would become my worst enemy. I was not prepared for the way my illness changed everything I thought I knew about living. Battling physical pain is now the norm and I’m not sure that those around me can even tell on some of the days. I learned that even though the pain is always there, I don’t have to be one.

What they don’t tell you about chronic illness is that you will be left in the dust by your life. Friends will not stick around to watch your struggle. It hurts to watch. I know this because I was on the other side once, sitting in the hospital day after day waiting for the cancer to release my father from it’s nasty grip. You never get better and that is a hard thing to understand unless you’ve experienced it first hand. Medicine is so focused on fixing the problem that getting sick in this society means an assumed recovery, but that isn’t always how this works. I may have watched as my life and my friends moved forward without me, but I forged a new path just for me.

I had no idea that the best people seem to have the shortest lives. That when I was finally found my people, our time together would be limited by the very illnesses that brought us together in the first place. No one told me that in the span of one year I would lose four of my closest friends. That the special bonds we shared could be as easily broken as they were made. But for every dear one I loved and lost, I learned about the continuity of of life and that, when my time comes, death will be merely returning home to the ones I love after a long, hard day.

Here’s another thing:

They also never told me that I would find out who my true friends were and are, ones that’ll have my back no matter what. That I would learn to empathize with everyone around me, that difficulty is not relative, and that hard is just hard. No one ever told me that I would become a stronger, more resilient human and that I would learn to find even the smallest bit of hope in even the worst of times. No one told me I would become a sun, a star, my own personal beacon of radiating light in the midst of my own tragic darkness. I had no idea I would fight a great battle, advocating with more power and passion than I had ever known. No one told me any of that either.

So as I look back at 2015, the year that almost almost conquered me, I am proud to be able to say that it didn’t.